Less than 1 percent of Latinos currently participate in health research funded by the National Institutes of Health (NIH). That’s why it’s so important for Hispanics to participate in the NIH’s All of Us Research Program, which aims to build one of the largest and most diverse data resources of its kind.
The goal of the program is to fast-track research on many aspects of health — including prevention and treatment of disease. Researchers want to study the lifestyle, environment and biological information of 1 million or more individuals living in the United States.
While the program welcomes individuals of all backgrounds, races and heritage, there is a strong focus on encouraging Hispanic participation and representation.
“Hispanic participation is critical to ultimately enabling us to more effectively prevent and treat illness in Hispanic populations,” says Katie Baca-Motes, director of the All of Us Participant Center at Scripps Research.
One size doesn’t fit all
In the past, medical research has primarily studied white men with a one-size-fits-all mentality about understanding health conditions.
“As the diversity of the population of the United States continues to increase, our assumptions about what may work for the general population become more and more challenged,” says Francisco Moreno, M.D., associate vice president for diversity and inclusion at the University of Arizona Health Sciences.
This research program wants to ensure all communities are represented to achieve a greater understanding of how people of different backgrounds are affected by the same conditions.
“If the lack of diversity in medical research continues, we run the risk of continuing one-size-fits-all medicine where we’re not taking into account variations that we might find in particular communities,” says Baca-Motes.
Studying Hispanic health
Getting involvement from the Hispanic community is a priority.
“It’s important that we educate our community to participate because if today I can offer myself for such investigations, tomorrow my children might benefit,” says Damiana Flores, a community organizer and cancer survivor.
Without information on Hispanics’ health, it’s challenging for researchers and medical professionals to know which health issues have the strongest impact on the Latino community. For example, according to the Centers for Disease Control and Prevention, Hispanics are approximately 50 percent more likely to die from diabetes or liver disease than whites.
“The more diverse representation we have, the better outcomes we can give back to the public,” says Ed Ramos, Ph.D., team lead and program director at the All of Us Research Program at the NIH.
Make an impact
Hispanic involvement in this program is crucial to helping further the understanding of how the community is affected by health conditions.
The program is currently focused on recruitment. Participants can sign up online for the free program. They will review consent forms, agree to share electronic health records and fill out a basic health questionnaire. Some participants may be asked to go to a local clinic to have physical measurements taken, provide samples and complete additional health assessments. Participants will be asked to stay involved for at least 10 years, providing additional health information periodically.
“All of the data is going to be shared back with participants so you’ll have the opportunity to potentially learn something new about your health,” says Baca-Motes.
Program participants can have a meaningful and lasting impact on the health of the Hispanic community. The opportunity to create an improved future is here. To enroll in the study, go to: https://www.JoinAllofUs.org. Anyone can participate in English or Spanish.
Kristen Castillo, [email protected]